Husband had Whipple surgery and chemo: He's uncomfortable

I am on CHEMO. Lost almost 20 pounds but now back up to 123 from a low of 115.
Boost "very high calorie" from Nestle has helped a lot It has 530 calories in a 8 oz package.

For what it's worth, over the past couple of weeks I've read and compiled numerous online resources as my wife and I attempt to get a firm handle on the pancreas and pancreatic cancer. These listed resources, arranged by topic, vary in depth and quality, but all have been helpful to us to some degree. I continue to edit the contents every few days as we learn more. I hope people find something in this this list helps someone along their way.

Pancreas Anatomy/Physiology
Basic https://open.oregonstate.education/aandp/chapter/17-9-the-pancreas/
Advanced https://www.kenhub.com/en/library/anatomy/the-pancreas
Physiology https://www.ncbi.nlm.nih.gov/books/NBK459261/#article-815.s1

Pancreatic Cancer
Basic https://en.wikipedia.org/wiki/Pancreatic_cancer
Signs/Symptoms https://betahealthy.com/20-pancreatic-cancer-symptoms-you-should-never-ignore
Dx and Rx of Pancreatic Cancer https://youtu.be/Zd4rZjlu6H8
Pancreatic cancer explained (CNN) https://edition.cnn.com/2020/11/08/health/pancreatic-cancer-explainer-trebek-trnd/index.html
Pancreatic Cancer types https://www.hopkinsmedicine.org/health/conditions-and-diseases/pancreatic-cancer/pancreatic-cancer-types
Pancreatic cyst types https://seenamagowitzfoundation.org/pancreatic-cysts/
Types of Pancreatic cancer https://pathology.jhu.edu/pancreas/types-of-tumors
Cancer stages https://www.hopkinsmedicine.org/health/conditions-and-diseases/pancreatic-cancer/pancreatic-cancer-types
John Hopkins https://www.hopkinsmedicine.org/health/conditions-and-diseases/pancreatic-cancer
Mayo Clinic https://www.mayoclinic.org/diseases-conditions/pancreatic-cancer/multimedia/vid-20537986
City of Hope https://www.cancercenter.com/cancer-types/pancreatic-cancer

Support Networks and Foundations
Pancreatic Cancer Action Network https://pancan.org/
National Pancreatic Cancer Foundation https://www.npcf.us/
National Pancreas Foundation https://pancreasfoundation.org/
Hirshberg Foundation - UCLA https://pancreatic.org/
Seena Megawitz Foundation https://seenamagowitzfoundation.org/
NIH NCI Pancreatic Cancer https://www.cancer.gov/types/pancreatic

Top rated hospitals for gastroenterology
Mayo Clinic top rated: https://health.usnews.com/best-hospitals/area/mn/mayo-clinic-6610451/gastroenterology-and-gi-surgery
All rated hospitals https://health.usnews.com/best-hospitals/rankings/gastroenterology-and-gi-surgery
Choosing Pancreatic Cancer hospital & doctors
https://pancan.org/news/choosing-the-best-pancreatic-cancer-doctor-and-hospital-for-you/

Pancreatic Cancer Treatments
Roadmap for treatment https://pancan.org/news/pancan-publishes-roadmap-for-treating-patients-with-pancreatic-cancer/
"Right Track" model https://academic.oup.com/oncolo/advance-article/doi/10.1093/oncolo/oyad080/7116284
Treatment advances https://www.comhs.org/about-us/newsroom/health-library/2019/04/02/treatment-advances-making-pancreatic-cancer-a-less-deadly-disease
Immunologic implants https://www.houstonmethodist.org/newsroom/implantable-device-shrinks-pancreatic-tumors/
Promising Pan Can Vaccine https://www.nytimes.com/2023/05/10/health/pancreatic-cancer-vaccine-mrna.html

Whipple Procedure
Mayo Clinic https://www.mayoclinic.org/diseases-conditions/pancreatic-cancer/multimedia/whipple-procedure/img-20008531
Drs.at Mayo - Rochester who perform Whipple: https://www.mayoclinic.org/tests-procedures/whipple-procedure/doctors-departments/pdc-20385055?locations=Rochester%2c%20MN#e58b37f00e764b1f8a4fd4137b10e1c5
MDAnderson (Texas) https://www.mdanderson.org/cancerwise/whipple-procedure-and-pancreatic-cancer-treatment-9-things-to-know.h00-159459267.html
UCHealth - Cincinnati https://www.uchealth.com/en/treatments/whipple

(ERCP) Endoscopic Retrograde Cholangiopancreatography
https://www.niddk.nih.gov/health-information/diagnostic-tests/endoscopic-retrograde-cholangiopancreatography

(EUS) Endoscopic UltraSound
https://www.mayoclinic.org/tests-procedures/endoscopic-ultrasound/about/pac-20385171

CA 19-9
https://pancan.org/facing-pancreatic-cancer/diagnosis/ca19-9/
https://medlineplus.gov/lab-tests/ca-19-9-blood-test-pancreatic-cancer/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6280291/

Diet and Nutrition Pancreatic Cancer
Nutrition and pancreatic cancer https://www.hopkinsmedicine.org/health/conditions-and-diseases/pancreatic-cancer/pancreatic-cancer-nutrition
Importance of diet https://cancercommons.org/latest-insights/pancreatic-cancer-why-diet-is-important/
Starving cancer https://elissagoodman.com/health/cancer-fighting-gut-cells/
Post Whipple diet https://www.nyp.org/documents/nutrition/resources/Client-Ed-Whipple-Surgery-Nutrition-Therapy.pdf
Best vegetables https://pancan.org/news/friday-fix-best-veggies-pancreatic-cancer-patients/
NPF's Recipes for Pancreas Disease https://lsc-pagepro.mydigitalpublication.com/publication/?m=65499&i=685338&p=1&ver=html5
Juicing recipes (Stanford) https://stanfordhealthcare.org/medical-clinics/cancer-nutrition-services/recipes/juicing-recipes.html

Alternative Meds and Treatments
PSK (Krestin) https://www.researchgate.net/publication/233875400_Polysaccharide-K_PSK_increases_p21WAFCip1_and_promotes_apoptosis_in_pancreatic_cancer_cells
PSK (Krestin) https://pubmed.ncbi.nlm.nih.gov/23217280/
Krestin https://www.sciencedirect.com/topics/medicine-and-dentistry/krestin
Turkey tail mushrooms https://www.verywellhealth.com/turkey-tail-mushroom-6890534

maedanosetchan,

Thanks for your reply. It helps to connect with someone in similar straits. Treatment intervention 9 days after biopsy results is great. In retrospect, I wish I would have explored options other than Mayo - Rochester due to the unexpected extended time lag. Living in Alaska, as we do, limits one's options. If what you say is true, that it takes a decade or two for pancreatic cancer to form, perhaps the delay won't matter too much. On the other hand, I've read that pancreatic cancer cells grow aggressively. Your recommendations confirm what I've been reading.... hydration, a lot of protein (as well as antioxidants, fiber, fruit, vegetable, etc.), and exercise. My reading also indicates M.D. Anderson is one of the very best places in the country for pancreatic surgery, Whipple procedure or otherwise. Good luck to you, and to everyone else, who find themselves at the beginning of this unexpected journey. I'll follow up with a note showing a list of online pancreatic cancer resources in case it may of use to anyone. Thanks again for sharing.

Because the connection between the oncology department and surgical is so much tighter ... I don't mean assessed in the sense additional scans are fine, but it does mean blood tests are assessed immediately, and, while I have no experience in this regard, Mayo's team would be able to more quickly change chemo regimens.

mayoconnectyser1,

Thanks very much for your reply. How is it possible to be assessed "every day" at Rochester while receiving chemo?

I am in a similar situation. I got the biopsy result on Feb. 2 of this year. The size was 1.9 x 2. 5. CA19 was 200. The port was implanted right away and my first chemo started on Feb. 10 at the local hospital, Merkey Cancer Center where I had ERCP and EUS in Lexington, KY. I have had 7 cycles so far, and my CA19 is now 28.1. After my 8th cycle, I will have a Whipple procedure on June 8 at MD Anderson in Houston. I feel you could have started your chemo at the local hospital as I did, but if you are seeing doctors at Mayo in 9 days, maybe no need to do so. I heard it actually takes 10-20 years for pancreatic cancer to form. So, I think one month's wait is not too bad. Please eat a lot of protein, exercise, and make sure you're hydrated. I learned those 3 things are keys. Let's fight against this demon together!

wjk,

My non-professional advice is to get chemo started as quickly as possible - and, if there is any way to stay in Rochester, to continue it there. I know this is a very hard and inconvenient, but it will allow them to assess you every day - and you will be able to push for as much chemo as possible - while having an advanced center available to deal with side effects.

Thanks very much for the background information and sharing tumor size. Three weeks ago a 1.8 X 1.9 cm was detected at the head of my pancreas proximal to the extreme lower common bile duct resulting in abdominal pain, light jaundice, very dark urine, abnormal bowel movements, enlarged bile duct/gall bladder/pancreatic duct, grossly elevated enzymes and bilirubin, and a CA 19.9 of 316. The abdominal CT scan showed no other abnormalities. Following an ERCP procedure and insertion of a plastic stent the following day, most signs and symptoms went away over the course of a week. We now are anxiously awaiting a series of appointments at the Mayo Clinic - Rochester beginning in 9 days and very eager to get going. We were initially advised we'd been seen promptly, but it's now been a month long wait and we are concerned the tumor has grown and perhaps metastasized. We hope the tumor is benign and resectable, but are preparing for something worse. Any and all advice welcome. Thanks for sharing your story.

Good Morning @wjk . The size of my husband's tumor was 5.8cm in the head of the pancreas. Partial response to neoadjuvant treatment and at time of removal was 5.4cm. No signs of metastasis on any scans (CT, PET, MRI, and diagnostic laparoscopy) but due to the size he is staged at IIA. 8 rounds of chemo (Folfirinox) pre-surgery and doing the final 4 now (last one is June 13th).

@icelander19 my oncologist scheduled a surgical consult for an endoscopy due to some symptoms I had been experiencing. Surgeon had a quick visual look at Whipple incision area while I was standing and then again while laying down. He informed me that the bulge was a hernia, and had me feel where it was. I had questioned the bulge long ago (a few months after Whipple surgery, once I started eating myla re normally) and was told that was just how I had healed. I assumed it was a result of the restructured digestive system. I now know what to watch for - at this time they don’t want to repair it as it isn’t causing any problems.